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Saturday, October 23, 2010

We made an attempt to go to the Pumpkin Patch on Thursday for the obligitory photo opp but timing didn't work in our favor and a nap prevailed...we'll try again next week. Instead, Harper made a visit to Honey and Grandy's house to try on her Halloween dress that Honey is making her. Honey created her own Halloween back-drop on the front porch and the camera began snapping. Who needs a professional photographer when you have a grandmother that takes pictures like this?

Afterwards, we had a serious conversation about Halloween and some of the upcoming festivities.

Wednesday, October 20, 2010

I feel like I’m starting to venture back into the real world after 2 ½ months of living in a bubble. I’m pretty embarrassed to admit this but I was at my parent’s house last week for dinner and the news was talking about this big event happening down in Chile. Um, so apparently there were these miners trapped in a mine for 69 days??? This was the first I’d heard of the miners….seriously. An event that will shape the year 2010 and I barely knew what was going on! Now keep in mind that they’d been trapped since August 5 and Harper was born on August 4. Can you hear me trying to justify my stupidity? I didn’t realize how little tv I’d been watching, how infrequently I’d been on the internet and how out of touch with reality I’ve been. I’ve always been pretty diligent about keeping up with the news in the world so I’ve now added a dose of CNN and NBC Nightly News to my daily routine.

Harper’s started to get out and about a little more. Our pediatrician said we can make outings, just try to go when our destination will be the least crowded. So I finally introduced Harper to my shopping Mecca…Target. I love Target. I get a rush when I walk in the doors. I could spend hours wandering the aisles, justifying my need for the cheap clothes that will become my staple wardrobe piece for the for the next month before it falls apart from overuse, perusing the holiday décor and deciding what my house just can’t go without. So Harper, meet Target. Target, meet Harper. You two need to get to know each other a little better since you’ll be spending a lot of time together. We picked out Harper’s Halloween costume and snuck in a few other “must have” items.

Harper in her purple on October 20 to support GLTB Spirit Day

Last week was full of dear old friends from the past. On Thursday, Harper had a reunion with her NICU cube mate, Reese, and her mom, Staci. Reese is doing great but unfortunately, I completely forgot to break out the camera for a photo opportunity! Then on Friday, her Grandpa was in town and was able to squeeze in a visit with Harper while he was here. On Saturday, Harper was excited to see Jennifer and Nicci, two of her NICU nurses who came by for a visit (once again, I forgot the camera!). Who would have thought that a 10 week old would have so many “old friends”! Harper with Grandpa

And this week has been full of new friends. We made a visit to see Anabelle Goertz and welcome her home. She’s only a week old and makes Harper look huge! I’m now one of those parents saying, “Where has the time gone? My baby is so big!” Yesterday we had a play date with Field Johnson. Field and Harper totally hit it off and even held hands for a while. I might see other dates in the future for these two. And today, Harper got to meet her great-grandmother Evelyn. Harper took to Evelyn immediately, flashing her a smile the second she saw her. Thank you to “Bonnie the Great”, Harper’s great-aunt came along as well. Harper has already spent some time with Bonnie the Great but had fun seeing her again.

Brooke & Harper with Kathryn & Anabelle

Harper and Anabelle - new BFF's

Harper hearts Field

Harper with Evelyn

Bonnie the Great

I was in Georgetown for the day on Saturday for my uncle’s funeral so Jared had his first full day of watching Harper solo. I left the house at 7:30am and by 8:03am, I had the following text message:"She already pooped on me"
When I got home at 4pm, Jared was still in his pajamas and was looking pretty exhausted. He did great for his first full day alone but hasn’t yet mastered the art of taking advantage of Harper’s nap time!

We’re really seeing some success with the compression wrap we’ve started using for Harper’s O. We weren’t anticipating seeing a difference so quickly but Jared and I both think it’s looking smaller. I’ve taken some photos to show but I don’t know that they illustrate the difference we’re seeing. There are also large chunks of scab come off each time we unwrap it and there’s nice fresh, pink skin underneath. All in all, we’re very happy with the progress in this short amount of time!

Wrapped O

"Enough with the pictures Mommy!"

Lastly, I mentioned I attended my uncle’s funeral on Saturday. Denny Pickett was a talented artist who illustrated the Texas landscape and rivers in his work. He truly captured the beauty that lies in the quiet corners of our great big state. I wanted to share some of his work to honor his life.

Wednesday, October 13, 2010

We have been busy, busy, busy over the last week. Harper had her two month checkup with the pediatrician on Friday and the chunky monkey weighed in at 9 lbs 6 oz! She jumped from the11th percentile in weight to the 14th percentile so being home is definitely doing her good. She also had her two month vaccinations and they made her so pitiful for the rest of the day. Once again, our little girl was like a limp noodle all day and when she was up, she was fussy. We are not a fan of vaccination days but good to know for the future.

We were also given the go ahead to let Harper sleep through the night and feed her when she wakes up. She's increasing her time between feedings more and more and therefore, sleeping more each night. Ideally, this would be a wonderful situation for her parents but here in lies the continuation of my lifelong love-hate relationship with my boobs. When I was in 8th grade and went from an A cup to a C cup in a school year, I was thrilled....until the boys in junior high started accusing me of stuffing my bra and nicknamed me "Tissue". As I began to grow through high school, so did the twins and they topped out at an E my junior year - I hated those blobs dangling from my chest! So, I made the decision to get a reduction allowing me to embrace the chest once again. When I had Harper and was told over and over that breastfeeding would be a challenge, I loved them when the milk showed up. However, they are on my bad side once again. Ever heard of clogged milk ducts? Well, I have the pleasure of experiencing clogged milk ducts at least once a week. And it doesn't occur in the same place each time. No, my boobs have decided to share the pain for all of the bosom to feel. So as my daughter sleeps soundly from 10pm to 4:30am, I wake in pain throughout the night when I roll over to discover that one of those suckers has clogged up again. The solution? It makes me giggle like a middle school girl in sex ed class each time I talk about it. "Pump frequently. Massage the breast as you express your milk. Ensure the nipple isn't blocked while pumping." And let me tell you, "massaging" isn't what I call it when having to mash down on a giant rock lying under my skin while an electric plunger is sucking at my boob. Oh, I hate you clogged milk ducts! But I digress...

A big step this week was our trip to Houston to Texas Children's Hospital to meet with the pediatric surgeon, Dr. Cass. We left early Monday morning to drive from San Antonio to Houston and Harper did great on the way there! She loves the car and slept a good portion of the way. When she wasn't sleeping, she just gazed out the window at the scenery passing by. We had a couple of stops to change diapers and one stop to feed her but otherwise, made great time. Harper had her first restaurant experience as well when we grabbed lunch in Houston before her appointment but slept the whole time we were there. Jared and I really wanted to explore our options for Harper's treatment of her omphalocele and TCH is one of the top hospitals in the country. They see a number of omphaloceles and we were recommended there by numerous people. I prayed hard that we would know the right course to take for Harper and that our decision would be clear. Within 5 minutes of sitting with Dr. Cass, we knew that Houston was the right choice for us. If you remember from my previous post, Harper was scheduled for surgery here in San Antonio at the end of the month. Dr. Cass's approach is a slower approach but much less envasive and traumatic. His word of the day was "easy". "This is an easy omphalocele. The correction of this will be easy. We can fix this with no problems, it will be easy." I thought Jared was going to jump up and hug Dr. Cass right then and there!

The new process moving forward is to use compression on Harper's O. We are stopping the Betadine treatment since its causing the O to be a hard scab. He was impressed with how the O looked and thought it was handled very well up to this point but moving forward, we need to make the O more malleable so we can basically squish the contents back into Harper's abdomen. However, this squishing will be a very slow process. As her abdomen grows and the O is compressed, the contents will ideally be engulfed back into her body. For now, surgery is planned for next summer and by the time this happens, we should be able to just correct her abdominal muscles and use the extra skin from her O to create a designer belly button. We are going to have to see how the O transitions from the dry Betadine treatment to the now wrapped O and hope that it doesn't harbor infection. If infection starts to grow, we might start using Silvadine on the O to help with skin growth, bacteria and malleability since its a wet treatment. We will travel to Houston every 6-8 weeks to follow up with Dr. Cass but otherwise will communicate with him via email, pictures and using modern day technology. Pretty cool, huh? We were anxious about the surgery at the end of the month since there were still so many unknowns involved so we are feeling more at ease with the new process.
We finished up with our appointments around 4pm, fed Harper and were able to see my friend Amy, who is a nurse in the Pediatric ICU at TCH while Harper ate dinner. We hopped in the car thinking this traveling with a 10 week old was pretty easy stuff. We got stuck in some Houston traffic (expected) so made it out of Houston just a little later than we wanted to. And then our little alter ego Rage decided to come out to play. I think the combination of a long day, being cooped up in a car seat for 7 hours and getting hot were the perfect combination for a melt down. After about 1 hour and a half of crying, stopping, feeding, diaper changing, driving, stopping, rocking, singing, dancing, driving, stopping, Jared and Brooke crying, stripping Harper down to her diaper, driving and stopping, I think we finally wore Rage worn out and Harper fell asleep. I think next time we'll just plan on spending the night instead of trying to be rockstars and making the trip all in one go.

And my last little Harper tidbit, for those of you that know Jared and I well, we rarely call each other by our own names....that is unless one of us is unhappy with the other! Most of our names make no sense to those around us and we often get weird looks in public when referring to each other as T, Beats, Knucks, Poop Squash, etc. Well, the same has fallen upon our daughter and I'm sure the names will continue to emerge and grow as she does. For now, my Harper go-to name is McGooper Goops. Jared's Harper name is Squadoosh. Go figure!

I'd like to give a very big "Welcome to the World!" to Miss Anabelle Goertz who was born on Monday evening. Please keep Anabelle in your prayers as she was having some heart apnea and had a little overnight stint in the NICU. We know she must have had great care since she got to meet Harper's old friends! I also ask that you keep my aunt Jan, cousins Ty and Nathan and their families in your prayers. My Uncle Denny passed away on Sunday night. He was a talented man and we will miss him.

Wednesday, October 6, 2010

Harper had her two month birthday on Monday and in celebration of the event, we had a photo session!

She's starting to smile so much and has started talking (well, minus the actual words) up a storm. I'll try to catch some conversation on video to post later this week.

We finished her antibiotics on Monday too and we're so thankful to be done. They were doing a number on her stomach and making diaper changing an interesting and very regular experience.

We had our first physical therapy session since leaving the hospital this week. Harper's stomach muscles are splayed from her omphalocele. This, along with her lack of tummy time will make her a little developmentally behind so PT will be a weekly appointment for us. Its more to teach Jared and me how to work with Harper when she's home and to track her progress. She's doing great with her head control, kicking and arm movement. Getting out of the house is an experience all together. I thought I was doing so well with my planning by trying to schedule PT far enough from a feeding that she wouldn't throw up everything she just ate but I went a little too long on the back end. She was good for about ten minutes and then "Rage" came out. Jared and I have decided if Harper was a UFC Fighter, her announcement into the ring would be: HARPER "RRRRAAAAAGGGEEEEEE" MEABON!!!! In other words, Rage is her alter ego that emerges when she's hungry or during bath time. And it is not pretty! The other physical therapists started shutting their doors to block out the screams. A little embarrassing but when the girl's hungry, the girl is hungry! I've learned my lesson and would prefer spit up over the screaming.

I've been getting the question about what Harper is wearing these days. At night, we have her in snap front gowns or one piece sets with the snaps open so her O peeks out. During the day we have her in pants and kimono or cropped tops. Harper and I had to have a serious discussion about the use of crop tops and midriff bearing shirts. This will be the only period of time in her life when crop tops are acceptable. They are not to be worn post surgery and should specifically be avoided past the age of 12. Under no circumstance will a crop top ever be appropriate for Spring Break.

We are so use to her O that its almost like another limb. I keep her covered when people come over, not because we're embarrassed about how it looks but because I don't know what people's comfort level is with seeing her O. But if you come by and would like to take a look, by all means, let us know. We're so proud of the progress its made and how good it looks compared to what we started with that we're happy to play omphalocele show and tell.

As we discuss surgery and the future, I've been thinking alot about what her stomach will look like later in life. Our surgeon has told me that she will have scarring on her stomach but they will try to make her a belly button when surgery is complete. It will be higher on her stomach than a "normal belly button" and it probably will look different. How do I give my little girl the confidence to not let any teasing effect her? If she ever gets teased about her belly, how do I convince my sweet girl that she is perfect in every way? I want her to realize how those scars will be a physical reminder of what God has done in her life and how many people prayed for her. I just hope I arm her with the confidence she needs to let her know her "differences" are really strengths and something to be proud of.

I have a few prayer requests to ask. First, welcome to the world Tobias! Tobias is a fellow O baby born last week. He's had his surgery and is doing so well. Please keep his parents, Carolina and John, in your prayers since they were discharged yesterday and are now back and forth to see their little man.
Please keep Kari and Scott in your prayers. They gave birth to Colin last Monday and Colin joined the Lord in Heaven on Tuesday. I ask that you pray for peace for Kari and Scott and for God's grace in their lives during such a heart breaking time.
Lastly, please keep my Uncle Denny and his family in your prayers. Denny has developed an infection in his brain and his body is struggling to fight it.

Friday, October 1, 2010

Today marks the beginning of our first weekend home and we can't wait to spend a full weekend out of the hospital as a family! We're really starting to settle into a routine and Harper is a pretty easy baby to have around. We were told that she might have trouble adjusting to the quiet house after the constant beeps, buzzes and noises of the NICU but she seems content in any surrounding, whether it be full of noise or completely quiet.

Harper has enjoyed all of the fun things that homes offers – her room, baby gear, toys and all of the gifts she’s received. She especially loves the Prayer Quilt that was so lovingly made for her by the Two or More Reunion Group – each knot represents a prayer said for Harper and what a great physical reminder of the power of prayer. She’s also had so much fun having visitors that have been waiting to hang out with her. Uncle Brentie high tailed it back to visit at the beginning of the week and I can already tell how much those two are going to love each other! Harper also likes being outside and the weather has been awesome. We’re finally putting that stroller to good use around the neighborhood. Harper on her prayer quilt

Since Harper has her omphalocele, her body is constantly acting like its repairing a wound so she is burning more calories than other babies her age. For this reason, she has trouble putting on weight on breast milk alone. I can breastfeed her twice a day but otherwise, I’m pumping and adding formula to breastmilk so we can manage her weight gain by adding extra calories and know exactly how much she’s taking. It seems like there’s always something to do involving her meals whether its pump, feed her, wash bottles, wash pump parts, fortify milk and once I’m done, the process starts all over again every three hours. We were given the okay by the pediatrician to feed her every four hours at night so I’m grateful for that extra hour of sleep!

Speaking of sleep, our girl is an excellent sleeper. What a gift! We try to get her down for the night between 8pm - 9pm. After this point, I wake her to eat at 10:30pm, 2am and 6am. She sleeps right up to the point when I get her up, finishes as much of a bottle as she can before falling right back to sleep. Have you ever tried to burp a sleeping baby? Its not easy! As of now, we have her in a bassinet in our room but once we feel comfortable, we’ll move her to her own room like a big girl. Harper napping in her room

I’ve turned into a Harper’s mini-nurse for the time being. We are caring for her omphalocele here at home. I’m cleaning it with cholra-prep every day and then applying the betadine treatment every other day. She’s still on her antibiotics and meds so she has something added to almost every feeding. Additionally, we still can’t get her O wet so for now, she’s a sponge bath girl. And let me tell you, this is a two person job! She HATES sponge baths so Jared plays the role of soother, therapist and dryer while I’m the operational point person working on soaping, cleaning and diaper changing during the bath. Unfortunately, the girl’s gotta be clean so, on we march.

Harper had her first official pediatric appointment on Tuesday and is up to 8 lbs 12 oz. She’s in the 11th percentile for weight but we’re not going to pay attention to numbers as long as she’s climbing the chart as she’s suppose to. Other than the O, she’s looking great.

We also met with the pediatric surgeon in San Antonio on Wednesday. As of now, he wants to schedule to repair her O in stages and has scheduled her first surgery for October 29. His plan is to compress the contents of her omphalocele back into her abdomen and attach a piece of mesh to either side of her abdominal muscles to bring them together over the liver. He would then take all of her existing skin and try to close it over the mesh. If there isn’t enough skin, we would have another open wound to care for.

Jared and I want to be sure we’ve checked out all of our options and are 100% sure with the course taken for Harper so we’re going to meet with Dr. Cass, a surgeon at Texas Children’s Hospital in Houston, in week and a half. We’ve been referred to this surgeon by a few different people and in doing research, he’s a surgical badass (please excuse the choice of words but really, he is!). He’s worked with a number of omphaloceles before so knows his stuff. We’re hopeful that they will be in agreement with the surgeons here in San Antonio. Having the surgery take place at home would make our lives much easier but we’re going to do what would be best for Harper and trust that God will make that decision clear. More to come as we finalize plans.

Thank you to those that have brought meals this week – it has made our lives so manageable as we adjust to this new routine at home. And thank you as well for all of the continued prayers and support. Our journey continues and we appreciate you traveling in with us!I call this the "Magic Chair" - she loves it!